The big toe is ugly and for most of us, that’s all it is–ugly, probably useful too, but mostly just ugly. But to Anne-Dauphine Julliand, the big toe represents the moment where everything sunk, where everything changed. Thaïs was turning two years old and seemed fully healthy, only she wasn’t. That’s what that big toe of hers meant when it kept on moving toward the outside as Thaïs walked–the young girl was suffering from metachromatic leukodystrophy, a deadly genetic disease, and would die soon.

Deux petits pas sur le sable mouillé tells that story. It tells the story of the fast and sad decline of young Thaïs. It’s the story of a disease that is ruthless, sudden and unforgiving. It’s a story that’s both sad and touching, and that might make you cry. But behind your tears of empathy is the understanding that each day that passes signifies not that Thaïs is one day closer to dying but, rather, that it means you’ve spent one more in her company. What you’re losing hurts, but what is still to gain helps you heal.

The disease is such that as times passes, Thaïs’s pain increases, and she approaches death. This is tough, and that’s when you cry. It may be silly to say, but the key is finding the good moments any- and everywhere you can, especially right in the heart of the pain and the disease–that’s the key for you, but also for the young Thaïs. The final destination, anyway, is already established–it’s death, and it’s waiting for all of us. But the journey to reach this final step remains to be written. Perhaps more than anything else, that’s the message of the book.

As you read the book, you’ll feel sorry for Thaïs. ‘No young girl should endure this at this young age,’ you tell yourself. You want nothing else than to help her heal, but it’s useless. Julliand wrote that, “Better is the enemy of well.” Thaïs, she never complains. She’s accepted the disease, perhaps because she has no other choice, and she fights it. She fights to ensure that she lives life–her life–as she sees fit. Thaïs adapts when everything worsens. More importantly, she forces you to do the same–she leads you, and you follow.

Throughout the book, you’ll curse the disease but somehow, it gradually prepares you for a death that’s both brutal and imminent. That’s why once you reach the ending and learn that Thaïs has died, you don’t cry. You’ve already cried enough by then, and it’s not her death that’s so sad. What makes you sad is to know that Thaïs can’t walk, can’t see, can’t talk, can’t eat, and can’t even move. Death is the final step in her journey, as it is for everyone. When the book ends on page 226, Thaïs is dead, too young, but she has lived a lifetime.

There’s nothing to do but to let Thaïs live her life. You need to let Thaïs live in order to let yourself live. And one day, you need to let Thaïs die too–because then, you’ll still need to let yourself live.

There’s nothing to do, but that doesn’t mean that you do nothing. Metachromatic leukodystrophy will kill young Thaïs but until then, there’s a whole life to live.